Confession Time

November 19, 2013

I have a confession to make. I suspect I will get some flak for it. Well-meant flak, but flak nonetheless. I will just offer this disclaimer: this is how I FEEL. And there are no right or wrong feelings.

So here goes: I have never felt like a true member of the Endometriosis Club. Endo and I have an extremely complex relationship. In the words of Iñigo Montoya, let me esplain.

I was first diagnosed with endo a few months shy of my 21st birthday. After about a year and a half of symptoms. The OBGYN who did my first lap said he saw it, diagnosed it as Stage II, but that it was too small to laser. Apparently it was also too small to properly biopsy since the pathology came back negative for Endometriosis – a fact of which my next OBGYN never tired of reminding me.

For the next seven years I was on some manner of birth control – low estrogen BCPs used regularly and continuously as well as three years of Depot Provera. As long as I stayed on birth control, alternating between regular use and suppression, my symptoms were very manageable (assuming the diagnosis was even correct).

During those years I also did a lot of research on this horrible disease. What I found scared the shit out of me. It became more comforting to think that the negative biopsy was correct and maybe I didn’t really have it. After all, I was not like all the women I read about who visited the ER on a regular basis due to severe pain. I had not had lap after lap trying to rid myself of it. I had not had to quit or lost my job. That woman didn’t look like me. And I didn’t want to be her.

Sure I had vague urinary symptoms that I suspected were endo related but no one could tell me what they were or how to fix them. Test after test revealed nothing wrong. I finally decided to just stop complaining about it. It wasn’t that bad. No ER worthy pain. No surgery recommended. I still didn’t look like that woman.

Call it denial if you want. But I did know it was real. I just didn’t WANT it to be real. And I knew when I stopped BCPs to TTC with Wrong Guy that it would be a problem. And it was. Three/Four months off BCPs and I was on Lupron. Seven months of Lupron shut me down pretty well. So well, in fact that it took an additional five months for AF to show. By then the marriage was over and I went back on BCPs.

Still, there were no more surgeries, no horrible pain. I got off easy. It didn’t take me ten years to get a diagnosis. I got one in under two years. It was still hard fought but I had help with that – a doctor cousin who believed me and helped me quite a bit. But again, that is just one more way in which I differ from most. I simply am NOT the face of endo. I got off easy. So easy.

My body shut itself down several years back which is what prompted me to jump on this fertility treatment train. No one knows why my body shut itself down. I only know that when I had to go off Nuva Ring to get the last bits of confirmation testing done I was TERRIFIED. I was terrified the pain would return.

It didn’t. For three years with lots of HRT and fertility drugs the endo stayed away. I was on high doses of bio-identical estrogen and the endo stayed away. Did I ever really have it?

I still can’t answer to what happened in the past but I can tell you what was found yesterday during my hysterectomy – a bit on the right side, a bit more on the left side and a large concentration hiding out underneath my cervix. Everything else was clean. Again… I got off easy.

Time will tell if all my recent symptoms resolve. I hope they do but I suspect some will remain.

Here’s what I *think* happened.

I think I always had some endo.
I think it all went away when my body shut itself down.
I think it only came back when my adenomyosis got so bad that it started spewing out from the hole in my uterus.
I think that all the new places I felt pain was the recent endo. All the old pains/symptoms, if not somehow uterine, may still remain.

I have/had endometriosis. But I still FEEL like I’m not worthy of the badge. Endo has not left my life and body in tatters as it has many women. Some people talk about how there is no “pain olympics” that there’s no winner (or loser) of who has suffered most. But I feel like so many women have suffered exponentially more than I from endometriosis.

I’ve had my share, more than anyone deserves, of reproductive bad luck. But the majority of it wasn’t due to endo. And so I struggle to identify as an EndoSister. Accepting that label feels like disrespecting all the women out there who have fought much harder battles than I.

I have intentionally held off on sending my pic to EndEndoForever because I didn’t feel like I was the face. I thought I’d wait for surgery and see how I felt after. I still don’t feel like the face. I do not feel that my story accurately represents this horrible disease. If you have endo and feel otherwise, I know EndEndoForever is still looking for pics.


4 Responses to “Confession Time”

  1. Kitten Says:

    Same here! I had no clue that I had endo at all until a lap 2 years ago revealed stage IV. I have always had horrible cramps for a day or two during my period, but nothing like the near constant pain described by many women with endo. My mild bowel issues are probably endo related, as well, but again, it hasn’t affected my day-to-day life. So, yeah, I don’t really consider myself part of the endo club. I know it’s probably a main reason for my infertility, but that’s about it. So, I get it.

  2. nonsequiturchica Says:

    Same here!! I had no idea that I had endo until I had surgery to remove a large fibroid- the dr didn’t think that he would find anything else but he found stage II endo. I’m not sure if my period issues were due to the fibroid or the endo, but I definitely wasn’t in constant pain either.

  3. Constant Says:

    I have endo myself and often don’t feel like “the face” either … I was diagnosed with “mild” endo after a lap 2 years ago and was told I could expect to conceive within 6 months of the surgery. 17 years of really bad menstrual pain, 10 years of TTC/infertility, 1 year of failed fertility treatments and I still don’t feel like “the face.”

    But we are. It’s such a weird disease … even someone like me with mild endo and a relatively clean uterus still can’t make and keep a biological baby …

  4. dogsarentkids Says:

    Completely understandable. I feel the same way about infertility in general. I haven’t done treatments, I haven’t had loads of tests, I haven’t used OPKs and charted for 10 years straight (though technically it has been 10 years). And I know that people think that way, who don’t understand infertility. “Well, you haven’t even tried IVF yet.” is something I have been told more than once, and in more than one way.

    If anything, it is another shitty thing to add to our shitty luck. You can’t even embrace it with everyone else. You STILL feel like you’re “not good enough.”

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